Life in a Virtual Diabetes Community

The other day I saw this non-diabetes related exchange on Twitter and it really resonated:

Over the last few weeks in particular I’ve seen a number of people lamenting a perceived loss of civility/kindness/supportiveness in the diabetes online community. It grieves me that people would have negative experiences participating in online communities. I have spent the last twenty years involved in this community and in the very early days of RealityCheck and the Type 1 Diabetes Network I invested emotionally, mentally and financially into building a community. During those early years we were attacked by a small number of health professionals (indeed a dietitian contributed nasty jokes about retinopathy anonymously to our forum when we failed to ‘enforce’ the messages he believed needed to be sent), a small group of people felt we weren’t inclusive enough so they spent time criticising us online and sending nasty reviews of the website to publications, people visited the forum paid for from the personal funds of the founder and yelled their criticism and aired their minor grievances there.

All this to say a degree of anger/nastiness/personal attack is not new in the diabetes community. What keeps me involved though is that for every person with whom I’ve had some sort of less than ideal experience online, there’s been 10 people from whom I’ve received empathy, validation, useful information and a warm fuzzy feeling. I would be so much the poorer, emotionally, intellectually and in physical and mental health without the online diabetes community AND I want others to experience this too. I came to realise that many of those who behaved in what we perceived were less than ideal ways were most in need of the help offered by peer support and their depth of feeling was indicative of just how important the community was.

All communities are made up of flawed individuals and we can’t always be at our best. I cherish the authenticity of real interactions and sometimes these can be uncomfortable-but the community needs diversity and will be stronger if independent thinking is allowed and sometimes we have to agree to disagree.

There is nothing more prejudicial to community life than to mask tensions and pretend they do not exist, or to hide from them behind a polite facade and flee from reality and dialogue. Jean Vernier

Of course there’s often a tricky balance between critique and constructive disagreement versus negativity and point scoring that may degenerate to nastiness. When I look at the rest of Twitter, I am really encouraged by the #DOC, there are occasional less than ideal interactions but generally there is a civility and search for mutual understanding and a sense of fairness that far exceeds that of most other social media interactions. Jean Vernier has wonderful insights into community life, being the founder of the world wide L’Arche communities of people with and without intellectual and developmental disabilities, he says:

It is difficult to make people understand that the ideal community doesn’t exist and that the equilibrium and harmony they imagine possible are things that come only after years of struggle, and that even then come only as flashes of grace and peace.

Community is the place of forgiveness. There are always words that wound, self-promoting attitudes, situations where susceptibilities clash. That is why living together implies a certain cross, a constant effort and an acceptance that comes from daily and mutual forgiveness.

I’ll leave the last word to Cherise who was recently on the receiving end of criticism that was not based on fact, and upon which a bunch of people on either side (including me) weighed in without doing a fact check first. Her response is all class and shows commitment to the community that goes way beyond her individual interests and gives me something to aspire to!